Glad you are doing well Msbearshark.
My operative reports (2) for both sides say lymph nodes taken out and diagnosis codes for glossapharengeal neuralgia. I think it is for insurance purposes.
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If anyone in UK is dealing with EDS/PoTs then Dr Sanjay Gupta in York Uk is a leading cardio specialist in this area. Sharing as FYI for other UK members. D
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Hey Everyone,
Just wanted to give another update. Iām 10 days post-surgery and feeling pretty good. I got my stitches out 2 days ago, and the swelling seems to have dissipated. The incision site still has a little hardness behind it, and the scar isnāt pretty yet, but it is healing. I can move my head almost completely normally. Leaning my head to the right is still a little stiff.
Interesting, Dr. Hepworth told me at my last visit that during surgery he discovered one of my cranial nerves had been wrapped around my styloid, which explains a lot of my symptoms. This is also why the pathology report I saw listed a shorter styloid length than he actually cut out. He had to grind off a portion to disentangle to nerve before removing the rest. He also told me the lymph node he removed had been swollen and pressed up against my jugular vein, hence the need for removal.
Up until yesterday I hadnāt had any of my previous symptoms, but yesterday and today Iāve had a little bit of vision blackening when going from sitting or laying to standing, and a mild headache on and off again. Iām also still having a hard time regulating my heart rate, it still peaks randomly with very minor movement. Because of this amazing forum I know these kinds of symptoms might come and go still for awhile, so Iām doing my best to be patient. Dr. Hepworth told me Iāll be on blood thinners for 12 weeks, and to expect some symptoms to come and go for 6 weeks or so. He also advised me to start a mild exercise regiment with heart rate monitoring starting towards the end of next week to help with the heart rate regulation and getting back to normal activity levels.
Other than the mild headache, some vision blackening, and the heart rate issue, everything else has improved dramatically. My brain fog has lifted significantly, allowing me to concentrate for far longer periods of time than before surgery. I havenāt had the severe cranial nerve pain I was used to before surgery. I no longer wake up feeling exhausted and spend my day feeling like Iām fighting to function while immersed in a vat of molasses. Iām still getting fatigued in the afternoon/evenings but it feels different. This feels like fatigue from doing things and healing, not from simply trying to exist.
At this point itās hard not to jump head long back in to all the things Iāve been missing doing. I have to keep reminding myself to take it slow and continue to allow my body time to recover. In the meantime Iām enjoying the little things, like having energy to make some holiday presents and connect with friends and family.
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So pleased that youāve noticed such an improvement, thatās great news! The Vagus nerve can get irritated during surgery so that could be affecting your heart rate, or did Dr H suggest something else?
It is hard not to overdo things, especially if youāve felt rough for a long time, so hope that youāll be able to keep being patient 
Hope that you have a lovely Christmas, and are able to properly enjoy it with your family this year 
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So glad to hear of your positive progress since op. D 
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What great news about how well youāre doing, @MsBearshark! Those remaining symptoms may foot drag about leaving for a some months but I expect theyāll gradually fade & then be gone for good. Some ES symptoms can come & go repeatedly during recovery but as time passes, youāll find they come to visit less & less frequently.
Keep taking it easy for the first couple of months as that will pay off big time toward faster healing.
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Well an update dear group: since posting last, I have had a diagnosis of bilateral trigeminal neuralgia (superior cerebellar artery compressing the nerve). Plus Eagle syndrome. On top of that, an infected left upper molar was extracted 10 days ago leaving me with a black and bruised face and to top it all, dry socket and infection and I am yet another course of antibiotics and having quite a lot of abdo pain and cramping (probably altered flora as this is my 15th course in 3 years). When will it end? When will I feel normal again? The pregabalin at small doses also gave me side effects and Iāve stopped taking it.
I have been referred to neurosurgery re the TN, but not heard anything yet. I have an ENT appt end January re another referral for the Eagle. I canāt seem to get any questions answered, ie is it the same person/dept that deals with both conditions? Which condition is causing the main/part problem? I was sort of hoping that once the dental infection had resolved, maybe the nerves could calm down spontaneously!! Haha I think that is wishful thinking.
Life is miserable and the waiting game continues. Keep well all and best wishes for Christmas and the New Year 
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Dear @McWelly,
I am so sorry this situation has snowballed (seasonal pun intended 
) into this very difficult situation for you. Not fun that your oral surgery turned into yet another healing nightmare. I hope youāre able to take a prebiotic & probiotic to help get your intestinal flora back in order.
I donāt think youād be seeing the same type of doctor to take care of the artery compressing the nerve, that would be either a neurosurgeon or vascular surgeon, but itās possible. Weāve had a rare few members whoāve had their styloids shortened/removed by neuro or vascular surgeons.
I hope you have some good respite from your pain during this holiday season & happy family time to help take your mind off of everything thatās ailing you. I will pray for that.
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So sorry that youāve had more complications from the tooth extraction, rotten for you. I would doubt that youād see the same person for both the TN & ES, although when you see the Neurosurgeon it would be interesting to talk over the ES with him. As far as Iām aware MVD surgery is around the base of the skull, so he might be competent to remove the styloid?
I hope that your wait isnāt too long & sending you hugs
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Well, my post surgery improvement has stagnated and reversed itself now that Iāve started doing a little more each day. Still not doing 1/2 as much as Iād like to be, and Iām back to having nearly all my pre-surgery symptoms. The incision site is healing nicely, and I have nearly full range of motion in my neck without pain. However, Iām starting to have daily headaches again, with sensations of pressure in my head that are somewhat affected by head position. My vision blacks out if I stand up or move too quickly. Light headedness and heart rate racing. Strange pings of pain move around my head and scalp. Odd aches and pains throughout my body when resting.
Iām hoping this is all just part of the healing process, and not an indication that surgery wasnāt successful. I do have IJV compression on my right side as well, so maybe Iāll just need to get that side operated on someday. Current symptoms have remained bilateral though, so thatās a little discouraging. On the other hand, I am getting decent sleep and waking up generally more refreshed, and the brain fog issues have dissipated, so thatās a positive.
Fingers crossed for a Christmas miracle and that Iāll wake up tomorrow feeling more like myselfā¦
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It is early days in healing terms, so try not to be discouraged! Itās hard to be patient I know, but be very careful not to overdo things, lots of us have done that & paid for it with more painful days etc. Like you say, it could be that you need the other side doing as well. Sending you a hug & will keep praying
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It is important to take recovery slowly as styloidectomy is a big op and recovery takes
A while. Remember to lie down & rest when pressure builds so you can open your JV to help release the pressure. Change position slowly- your brain is trying to cope with trauma of surgery and a change in how the blood vessels in your brain are working. It is frustrating to be ill and not to be able to do what you did when well, but accepting that reality is necessary on the journey. I hope your recovery from surgery does show benefits soon. It took well over a month before my first operation started to settle down. Take care. D
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So, I had my 4 week followup with Alison Love yesterday, and unfortunately she thinks I should have seen much more improvement by now. Her working hypothesis is that the ballooning didnāt hold and my IJV has collapsed again. Sheās ordered a bilateral jugular ultrasound to confirm, which I have scheduled for next week. If it has collapsed, it sounds like Iāll need a second ballooning and possibly a stint.
Anyone else had to have their veins re-inflated after surgery? Anything I should know or ask about? Are there any specific questions I should ask when I meet with the vascular surgeon? Are there any long term drawbacks of having a stint put in?
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Iām really sorry that your surgery results havenāt been great so far, @MsBearshark. Weāve had several members in your situation, but the one who comes to mind as being most recent is @Bopper who also had surgery done by Dr. Hepworth. She is looking at getting a stent to help keep her IJV open. I hope a second venoplasty (ballooning) will do the trick for you if the ultrasound shows the IJV has collapsed again. Itās such a frustrating situation when veins/arteries donāt stay open once the cause of compression is removed. We always hope for a great outcome from surgery even if it takes some months for those positive results to reveal themselves. Iām sending a hug & praying for a simple solution (ballooning vs stenting).
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Oh no! Iām so sorry! In my case, the ultrasound found that my jugular is 100% blocked on the inside. Take one step at a time and see what the ultrasound says. I assume itās being done at VIR? In my case we are skipping the ballooning and going straight to stent. Your mileage may vary. Initially Dr. Hepworth wanted to send me to Dr. Fargen in North Carolina for the stent, but now there is a doctor here in Denver at UCHealth who is doing the procedure. Iām waiting to get in to see him. Let us know what the ultrasound says. Iāll say a prayer!!
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So sorry that youāve not seen good results from surgery, grim for you!
I was lucky & didnāt need a stent as my veins opened up okay- theyād not been compressed for very long so I donāt know if that made a difference? The doctor who did my surgery mentioned itās sometimes a possibility, but said itās not ideal though as once theyāre on they canāt be removed & that the stents can sometimes cause pain. But like opting for the ES surgery, it depends on your symptoms & quality of life with narrowed IJVās- I felt so grim that I think if Iād needed them I wouldāve gone for itā¦
Let us know how you get on, thinking of you & sending you a hug
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Hello lovely, self educated and well informed communityā¦
As I posted earlier, my symptoms have returned since surgery, and Dr. Love believes my left IJV may have closed up again. So, I went and got a post-surgery Jugular Ultrasound done, and Iām hoping one of you who understands these test results better than I do can help me to decipher my latest test results? I have an appointment with Dr. Hepworth on Monday, so heāll go over these with me then, but Iād like to understand what I can before then. And would appreciate suggestions on any specific questions I should ask.
Here are the test results from my ultrasound this week (post styloidectomy and ballooning of IJV on left side). I am currently taking Eliquis (blood thinner) at 5mg 2x day:
Here are my test results from last August, prior to surgery and with no medication:
These were done at 2 different labs, so Iām having a hard time comparing numbers, but it seems like the flow rate on my left side at the SCM and Carotid Bulb are opposite on the two scans. What does that mean?
And, can someone translate āElevation in velocity and tortuous collateral veins are noted near the left foramen magnum.ā into understandable terms for me? Does this latest test show compression of my left internal jugular vein? Or does it seem like something else may be going on?
@MsBearshark - I donāt have a good understanding of what the numbers mean in these types of tests, but I do know that increased velocity of blood flow can indicate a blockage or compression in the vein. The tortuous (full of twists & turns) collateral veins are also an indicator that there is or has been compression in your IJV in that area as the body creates those collaterals to help reroute the blood that is getting āstuckā because of the blockage/compression.
Since your surgery was fairly recent, those collaterals likely developed over the months/years your IJV was compressed prior to your recent surgery. The body reabsorbs them when they are no longer needed, but that process takes time & wouldnāt have occurred at this point. Since you have a higher blood velocity near the left foramen magnum, those collateral veins are likely still in use, at least to some extent.
I hope someone who understands the numbers will comment further to help clarify your lab findings for you.
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Hi @MsBearshark !
The Doppler US imaging is not an exact science but can be helpful as a noninvasive tool for guidance. It varies greatly on the sonographerās technique ie: how heavy of a hand he/she uses which can inadvertently compress the vessels. That said Dr H typically calls any velocity measuring above 50cm/s indicative of pathology. It is good you are seeing him Monday! He will help clarify and get you moving in a good direction.
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I saw Dr. Hepworth yesterday. He told me that my jugular vein at the location of my left side styloidectomy is doing great. However, he believes that there is another major constriction very high on my right side. Based on the ultrasound, he expects that there is an IJV constriction in the vicinity of my Right Transverse Sinus. Since this location is actually within my skull and not in the neck region, Dr. H has referred me to Dr. David Case for a cerebral catheter venogram. As I understand it, this would involve a probe being placed in my vein and routed up into my skull in order to determine where, if anywhere, there may still be a constriction in my IJV. If there is a constriction at that particular location, Dr. H believes Iāll need a stint put in.
Dr. H does see some constriction at my right styloid as well, but he believes the major issue to be higher up.
I called Dr. Caseās office, and I canāt make an appointment until he gets my referral and reviews my case to decide if heās willing to do the venogram. When I asked how far out heās currently scheduling, they said well into March.
Not quite the news I was hoping for, but not much I can do about that. Have any of you had issues with additional vein constrictions post styloidectomy? Do any of you know of alternative, non-surgical procedures that might help open up a vein inside my skull? Have any of you seen Dr. Case and/or had a catheter venogram done? Is there any chance thereās something else entirely going on that I should have looked at at this point?
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